We have chosen to terminate the pregnancy. And this is going to be the hardest thing either of us have ever done.
The main reason for me is that giving birth to Finn and having the surgery would mean being away from my other children and especially Seamus, who is three and a half and has never had a night without his mama. He wants me and only me at night if he wakes or if he is upset. He would think that I had abandoned him and I think it might damage our relationship severely. We have told Noah who is almost six and he I think to some degree understands. Seamus' mind is full of bubba, lightsabers and apples.... He will not comprehend what is going on at all.
I feel like I am being forced to choose between my children. Between the one wiggling in my tummy and the two breathing children on the outside.
I also have to consider though what life would be like for Finn. Open heart surgery is a huge thing, to undertake and to recover from. Rather than spending his first weeks of life in my arms nursing and being cuddled, he would spend it mostly unconscious hooked up to machines. Even if he survived the surgeries, his quality of life would not be great. He would need oxygen and regular monitoring. He would tire easily - the specialist told us 10 minute bursts of exercise - whilst watching his brothers play unrestricted. And long term we do not even know if he would survive childhood.
I think that if I did not have two other children to think about or if the likely outcome was better from the surgery our decision would be different. And yet I am still wavering. I lay here feeling Finn move and kick and feel like a terrible mother for considering this. I always said that I would not have a termination unless my life was threatened, or my child had no chance of survival. But you know what? When you're in these shoes, and have to make that decision, the one I never thought I would have to make, there is so much more to consider. It is impossibly hard. And everyones personal and family circumstances are different.
Finn will always be part of our family and we will never forget him.
- Posted using BlogPress from my iPhone
((hugs)) What a terribly difficult decision you've had to make xx
ReplyDeleteSending you guys lots of strength for the next few weeks/months.
Oh what a terribly difficult decision to make. Love to you and your family through this difficult time.
ReplyDeleteI am so sorry , the descsion could not of been easy . I really feel for you all.
ReplyDeleteI can in part understand how your feeling , my eldest had health problems (not diagnoised in utro) but if we had found out i have no idea if we would of contined and needed surgery at a few days old.
She took ill again at 3 and that was worst as we had a one year at home (i was also 30+ pregnant) and it was horrible and we always felt like we were neglecting and letting someone down.
I think you are being very selfless here , i could tell from your tweets how much this baby is wanted . I think your very brave and i hope are getting lots of support through this
I am pregnant with my first child and would absolutely make the same choice if I was in your situation. I'm so sorry you had to make this decision at all, but you are definitely making the selfless choice. I find you very inspiring, and so brave for sharing your story in such a public way.
ReplyDeleteOh. I feel so terribly sad reading this, can't even imagine how sad it must be for you. This is a nightmarish experience - you must be exhausted coping with it - and emotionally shattered. I don't know what to say, except that this is really awful, it is too much pain for one poor mother (and her family) to bear.
ReplyDeleteI hope you are surrounded by supportive friends and family, you need to let them take over helping you and your family as much as possible. You have been so brave making this decision and it is truly the decision of a loving mother.
Found you via Zucchini Bikini on Twitter.
ReplyDeleteI am so so sorry. What a hard, heartbreaking decision to have to make. Strength to you.
xxx
What a heartbreaking position to be in. I am so sorry and I totally understand all the conflicting emotions you are going through. It's so hard for you but have faith in yourselves that the decision you have reached is the right one for your family - whatever that decision was, it would be the right one.
ReplyDeleteI just wish you love and strength for the future. Take all the help that's offered - don't try to deal with it alone. There are others who have been through this so let them support you.
As everyone else has said - what a horrible position to be in. Could you not ask the hospital if you could speak to a councillor, or someone who has gone through this? I only ask as I have a friend who was born with a congenital heart defect - she had a series of operations, the last was about 10 years ago, but she's around now to look after her grandchild and is happy and healthy. I would hate to be in your position, and with two other children to consider I can't begin to imagine how hard it must be for you - and really, neither can anyone else - but talking to someone who has been through a situation like this might help you?
ReplyDeleteWishing you much love and support in this most painful of times.
I am so sorry for you, and for your family. This is the sort of thing that most all pregnant women are afraid of. I can only imagine that having to actually make that decision must be tremendously difficult. My heart goes out to you.
ReplyDeleteI am so sorry that you had to make this decision. You and your whole family will be in my thoughts. Wishing you much peace.
ReplyDeleteI have a friend who has a beautiful, lively 3 year old girl who has a very similar (if not the same) heart condition. I would love to put you in contact with her if you'd like.
ReplyDeleteI lost a daughter to prematurity when she was 46 hours old. She was born at 26 weeks. I only made the choice to discontinue life support after she had been hemorrhaging in her lungs and her prognosis was very poor - she had little to no chance of survival, and if she did survive she would have been very severely impaired in many ways. The decision I made to remove her life support haunts me every day. I always wish I would have done more. I miss her more than I can say, and other children do not fill that void.
I would encourage you to do everything possible to advocate for your child's life.
You are not terrible. You are living through a terribly difficult time and having to make a decision I just cannot begin to imagine how this is for you. you are in my thoughts. Whatever some may say only YOU are living this.
ReplyDeleteWhat a difficult decision. I can't imagine. You'll be in my thoughts.
ReplyDeleteHey Claire, it's @KatiesPickles (used to be @graciekate)
ReplyDeleteI think you should absolutely not terminate. Yes that may be easy for me to say as someone not in your position, but I want to explain to you why.
If you have Finn and he has surgery, yes he could die. But he had a chance. Or his quality of life may not be as good as you mentioned, like not being able to rough house with your older sons as much. Okay, he may not be a basketball superstar, but he may be a prodigy pianist. God may have big plans for Finn.
I know you're worried about your other boys, but I think 3 is old enough to understand that his baby brother is sick and that you need to spend time with him. They aren't going to be mad at you if you are spending a lot of time with the baby in the hospital. I'm sure they're excited about the baby and if something happens to him now or later, they will be upset.
With that said, I know people that terminated in late pregnancy, and the grief doesn't go away. If you terminate, you won't terminate your feelings. You will miss your baby the rest of your life whether you terminate or he passes away later.
I understand that you are prochoice. Most AP people are, but I obviously am prolife. This baby is alive. You know what it is, so I'm assuming you're 20ish weeks. In less than a month, he is viable! He could live outside of your body. He's a real person. I know you don't know him that well yet, but what if one of your other sons got into a car accident? Would you say "don't resuscitate, he might have a poor quality of life or I might be away from my other son for too long." No you wouldn't, because he is your SON. So is Finn! He's alive and he can hear you talking. He kicks you and he loves you.
I know this is a big surgery to put a baby through, but if he makes it, then he's fine! He'll never remember, and he'll grow up knowing all that he knows. If he passes away in surgery, it will be painless, he'll be asleep. It won't be painless and he may not be asleep if you terminate. And he was given a chance through surgery. They wouldn't do these surgeries period if they didn't work. And if it doesn't, then that's what God chose. Please let fate, God, chance, whatever you believe in, take it's course. Don't burden yourself with this decision. It's too much and too hard. Just fight for his life and if you must grieve, then you can grieve having lost your son, not having lost your son and having chosen that path.
ReplyDeleteAnd I'm not trying to make you feel bad or guilt you into this decision. I'm just telling you, because EVERYONE is telling you to terminate, or sorry you have to make this decision. To me, there is no decision to make. He is a baby and he could have a chance at a normal childhood. He will have a few hiccups, but he, you, and your family could become better from it. Your husband probably doesn't understand because he's not the mother. We KNOW our babies the second we find out about them. Men don't become fathers until they hold and see them for the first time. They don't have that physical connection like we do. I can tell you want to give Finn a chance, and I know you want to. I pray that you do. I know your children will understand and I really really hope that your husband will turn around. Hopefully he's just in shock and scared. I know I would be. May be he thinks he won't hurt as bad as he could later, but he will. Because you will give birth to that baby. I don't know how y'all do it where you live, but a lot of late abortions here, the woman is induced and the still alive baby is left to pass away in a room, alone. Y'all will see and hold this baby, and I'm so afraid that you both will regret this decision. Take the path that you know you won't regret. Your relationships that may be strained with your family members can be fixed, but to choose something so ultimate for Finn cannot.
I hope I don't upset you or offend you in any way, but I feel really strongly about this and I think you need to hear the other side that no one else is voicing. Yes I could just walk away and unfollow and ignore it, but I can't until you have made a most definite decision, especially since you are so torn.
xoxoxoxoxoxoxoxoxoxoxoxoxox
And I'm sorry, one more thing lol
ReplyDeleteI totally understand you don't want to be away from Seamus. I had an errand to run but I know if he wakes up he'll be inconsolable for anyone else. Is there a way you can gradually make the transition since you still have another 5ish months? Or is there a place you can stay near this hospital that your whole family can stay? In America we have places for family to stay in for free when babies or children are in a hospital far away from home. Or even you can go home at night and your husband can stay there at night? He will most likely have 1:1 care from a nurse, so I don't think anyone would have to be there every single hour, kwim? I don't know how far away yall live from this hospital, but may be think of alternative living situations since you still have a few months left if that is all that's keeping you from surgery, etc.
I agree with @hautesinglemama and @Katie.
ReplyDeleteThat baby is alive. Yes, the prognosis right now is poor, but things happen. My grandpa wasn't supposed to live past a year, and yet he died at 89. Miracles happen.
From your twitter stream, it sounds like you don't want to do this. You still have hope for your baby. He is your baby. Alive and kicking right now.
If he dies in surgery, like Katie said, it will be peaceful. But if you terminate, that baby will be alive and feel everything. It will not be the peaceful end to his life any parent would want.
As a parent, we are supposed to protect our children. Things happen, yes, but even in the bad, we are supposed to help them. Wouldn't you rather spend 3 hours with him alive and well, rather than only the time in the womb before you get rid of him?
This is a hard decision, but you're terminating because you are worried if you could handle this. If your other children could handle it. Children are very resilient. Seamus is 3 1/2. If you explain, and start to transition from him slowly until birth, he will understand.
Your baby needs you. Don't give up on him.
Huge huge hugs hun. I wouldn't wish this choice on anyone.
I couldn't have said it better than Katie. Katie is a great woman and so I feel safe putting her words in my mouth as well. PLEASE reconsider your choice.
ReplyDeleteWe had a baby who was born with Craniosynostosis. A very curable disease. She needed surgery at 6 weeks old. We were able to keep it off until she was about 4 months old. Had I known before she was born that she would need this surgery, I would've done nothing. We found out the day she was born. Sure we were devastated when we found out. But we wouldn't have changed it.
Please just reconsider. Your older sons are old enough to understand. We had a m/c in December. Our youngest was 2 1/2 at the time, and she understands. She asks about the baby all the time, she understands that the baby was sick and God decided to take him (they say him) to heaven.
HUGS HUGS HUGS!!! After my m/c I wouldn't wish the loss of a child while in utero on my worst enemy. HUGS HUGS HUGS!!!!
I would like to point you to some current research that will contradict the argument that a termination will cause your baby pain. http://tinyurl.com/26dggad
ReplyDeleteThe research shows that foetuses do not have the necessary connections in the brain to feel pain until post 24 weeks, so please do not feel guilty about making that decision if you that is what YOU choose to do. xxxx
Claire, I don't know you, and I came across your blog through a friend. I want to take a moment and encourage you to do the hard thing, the impossible thing, and give this child you have already named a chance at life. A prognosis is just an estimation, based on the best information that the doctors have at the present moment. But a prognosis is not a guarantee. I know you are thinking of your other children right now, but your children could become better, more compassionate people because they love a brother who does not have the same abilities as they do.
ReplyDeleteI agree that you are the only one who can make this decision, and I know it is not a decision you have made lightly. But, I also know that there is a part of you that is not on board. That came through loud and clear in your blog post. Take a moment, and rise out of the devastation and chaos of the present, and look down the future of your life. The "what ifs" will suffocate you if you choose to terminate your pregnancy. But if you choose to give Finn a chance at life, you will marvel at every smile, every coo, every word, every step, every milestone will be a celebration. And if he never makes it to any of those things, you will know that at least you tried to give him those opportunities.
Parenting is not just about giving our children what they think they need in this moment. Your other children will adjust as necessary, because you will show them that parenting is also about showing them how to do the hard thing, even when it means hardship all around, and asks sacrifice of everyone involved. You CAN do it, no matter how desparate you feel now. You CAN care for this child that you already love and are bonded to. You may fool yourself into thinking that it will be easier this way, but I can assure you, it will not be. Both things are hard. Consider how you will best be able to live with yourself 10 or 20 years from now. The present is overwhelming, but if you take things one step at a time, you will get through it. You are strong, and resilient, and you CAN handle a baby with limitations.
Hugs to you.
This comment has been removed by the author.
ReplyDeleteHi, I was referred to your blog through a friend. I to have a baby with a CHD. She has had one surgery and will be having her next one within the year. She will also have many more surgeries as she continues through this life. She is an active, very bright little girl who continentally defies the odds that she has been born with. Her doctors say every time that they see her that they can not believe she has the serious heart condition that she has because she is so active and full of spunk. In my journey with children born with CHD I have ran into a lot of families with babies that have the same condition as yours. Finns life is not hopeless. Yes he will have a rough first year but when his surgeries are through you will have a NORMAL no not normal extra special tough little boy, who knows maybe he will defy the odds too, like my little girl.
ReplyDeleteAnyway I realize you have a very hard decision to make, and I am so sorry that you have to make it. Here is a link to many many blogs with children who have a CHD. Many of the children where born with HLHS and are thriving. Maybe reading about some of there stories will help you with your decision. Good luck!
http://heartheroslist.blogspot.com/
I agree with the last few comments - the baby is alive. I think it's wrong to do something to change that. You can't know how his health will be at birth, or what wonderful person he might grow into. I think you should give him the chance to show you.
ReplyDeleteHi Claire. My heart is aching for you right now. Although I agree very much with Katie, I think that it is impossible to know what decision you would make until you, yourself are in a situation like this. I'm am sending you as much peace and love I can via the internet and I urge you to PLEASE PLEASE PLEASE follow your HEART.
ReplyDeleteI found your blog through a series of Tweets, and felt compelled to read about you and your story. I cannot even imagine the conflict that is in your heart and soul right now. I am sure that you have done your research, Googled your butt off and spoken to many doctors. I just wanted to be another one to offer support no matter what you choose to do. I'm 100% Pro Choice and I know that this is not a decision you've made lightly or on a whim. Good luck to you and your family.
ReplyDeleteI'm so sorry your son is in this situation and you are as well but terminating the pregnancy just seems like the poor choice in this situation. I am not in the position to judge but neither are you which is why I feel the need to tell you that he deserves a chance at life. I hope that you don't hate me for saying that. I don't mean to be rude or hateful. I'm praying for you and for the life of your sweet baby boy who will still have a chance if you choose to keep him.
ReplyDeleteAnd many babies are born with your sons condition and survive and have a long happy healthy life! It's true. Yes surgeries are a lot and your little guy will go through a lot but compare that to death - it's nothing. If you're scared about hurting him think about what you're about to do to him. Your situation makes me so incredibly sad. I can't be okay with the fact that you're choosing to end his life over a chance of survival. Some pain or death? I would chose to see my baby live. It's God's decision - not yours.
ReplyDeletePraying so very hard.
You are such a brave woman and mother, to be able to make this decision (and I think even braver for sharing it online, where you open yourself up to comments).
ReplyDeleteWhen the pregnancy ends, either by live birth or termination, it will be you and your family living with the emotions that come afterward. Those might be emotions of relief, love, sadness, grief, understanding, or something else. But it's your life which is already changed forever, and you and your family should get the only say in what the final outcome is.
I'm glad your two sons (and Finn) have such a loving mother (and father) to think about what's best for them. Well wishes and strength for you and your family.
Sending you peace & strength, Claire.
ReplyDeleteI agree with everything Christian Prochoicer said.
ReplyDeleteThese people who think they "know" you or think they know what will happen to you, your two extra-uterine sons, and Finn if you put yourself and Finn through the physical and emotional torture of these surgeries and restrictions, don't know. Even if "I have a friend who had something like this happen" or "something like this happened to me" -- SO WHAT. Those people are not you. They are not your family. They know nothing about you and your family -- HOW DARE THEY COME HERE AND TELL YOU WHAT TO DO.
You have obviously thought about this carefully. Weighed all your options, all the pros and cons. I cannot comprehend how someone would have the gall to come to your blog out of nowhere and tell you what to do, as if you made this decision by shaking a Magic 8 Ball. The ignorance and arrogance is astounding.
I'm sorry to bring the ugly to your blog, but this kind of disrespect (and, frankly, mysoginy -- yes, even when it comes from other women) really gets to me. I had to say something.
I had an abortion, about a decade ago. I have never regretted that decision, because I know why I made that decision. I made the decision myself, I didn't let others bully me into doing something I didn't want to do, something that didn't feel right, something that was not what I thought was best for me and that potential child. I have often wondered how things would have been had I made a different choice, had circumstances been different, but I have never regretted my choice. My situation was completely different than yours -- our circumstances were completely different -- but I know you have put as much thought IF NOT MORE into your decision than I did. And I respect that.
I am now (wantedly) pregnant. At our first-trimester screening, our OB said our baby was at risk for a chromosomal disorder, which could have been Trisomy 13 or 18, which are pretty much fatal. My husband and I have been dreaming about this child since before we were married (I've been dreaming about a child since before my first pregnancy/abortion), but we agreed that if the results came back showing that our child had an abnormality that was that close to a death sentence, we'd terminate the pregnancy (even though I'm 33 and he's 41 and we're "running out of time" to have kids).
Please take care of yourself, and take care of your boys. Only you know the full story behind your decision, so ignore these people who pretend to know better than you.
Thank you for sharing your story, and I'm sorry people are taking this as an opportunity to attack you and leave hateful, ignorant comments. I only follow you on Twitter, but from that I can tell you are a loving, caring person and a great mother. Focus your energy on yourself and your boys. My thoughts and prayers are with you.
I sent you a private message on your Facebook...I hope you will read it. You and Finn have been on my mind constantly since I read your blog. I will be praying for a miracle of life!
ReplyDeleteLook I have tried to tweet you and gotten no response ... maybe you don't want to hear from us ... maybe the decision is made ... but I want you to think about something ... the ones that are alive and well what would become of us if our mother's had made the choice you are leaning towards ... I tried not to get attached but I feel like I can because I do have experience ... I've survived 28 years with this ... I've had 9 open heart surgeries ... 2 bleeding ulcers from the medications given to me to save my life ... and an appendix that almost ruptured killing me ... but I'm here ... mostly because of the dedication of the women who rubber her belly not knowing a child like me was inside of her ... and I know my mother well enough to know if she did she would have rubbed it twice as hard ... I've been pregnant and lost my pregnancy due to my CHD and most likely my child having one too ... but I through all the struggles and things I do not regret being alive ... if you do not want this child ... trust me someone else would ... have you thought of adoption ... if you personally feel you can't handle this that is OK but someone can and willingly will ... if you are worried about your other child and their feelings ... I want you to know that the message you send to them is not positive by doing this ... they will one day grow up and be able to question your actions as a parent and wonder if something had been wrong with them if they would even be alive ... do you want that type of guilt ... because I had a twin who died at birth ... and little brother who passed at birth too ... and I would hate to think that just because something was wrong with them my mom would have choosen for them to not be born ... because it would mean she would choose for me to not be born ... Honestly I see a lot of contradicitons in your blog ... and no I don't know you or your family but I do know the decision you are making isn't selfless and these people telling you this have no experience with CHD more than likely
ReplyDeletemy parents were told I had a 2% chance of survival ... that my heart was so malformed it was surprising I was even alive ... that I would never be like everyone else ... I'm telling you first hand that I have lived alone since 18 years old ... I have had a steady string of boyfriends ... I have gone to college ... I have lived ... and I'm fine ... I go to the doctor once a year now ... yes I know the first 10 years of my life were spent mainly in hospitals hooked up to machines or being cut open but honestly I wouldnt' trade it for the world because without it I wouldn't be in this world ... I love technology because it's saving so many kids but I hate it because it allows women to make this decision for their child not knowing exactly what is going on ... you are using a machine to make your decision ... what if your son is born and his defect isn't as bad as you thought ... I have many friends who thought their child was HLHS only to learn they are TGA at birth (and only required one surgery) ... whatever your decision is please don't make it on the basis that Finn is going to suffer ... either way he's going to suffer ... if you choose to terminate you aren't giving him a chance to live at all that is the ultimate suffering ... what is Finn's job is to change the world ... I truly believe that all pregnancies are souls wanting to come to Earth ... do not prevent your own child from coming to Earth ... as for if you decide to let Finn live and see what he has to offer heart wise he might surprise you ... what if you could see the future and know the Finn would be married in 30 years with children ... would you terminate him ... I doubt it ... but you can't ... my parents couldn't either ... but when given the chance to take me off the machines they wouldn't do it ... they said if I was meant to die, I'd die regardless of what machine I was hooked up too ... they were right because 28 years later
ReplyDeleteI know both of my parents are proud when I call them to say HI, see them (they live 2 hours away ... your live will return to normalcy too if that is your main concern which is seems to be ... sorry for the interruption but such is life ... at least you are alive to live it ... give Finn the chance to know life too), or whatever time I spend with my parents ... I know every tear they cried, every stress that my heart defect caused them, and every fear they felt ... have subsided because I'm alive ... and well ... now whether or not Finn will be ... won't you at least give him the chance ... from a person who actually has survived this and lost a child ... please give Finn a chance ... I'm trying to not be judgemental but you have to realize if every CHD parent made the decision you are leaning to ... me and my friends would not be here ... and no the world wouldn't be better without people like us ... the world is better because of people like us ... trust me ... if you don't terminate you'll learn the greatest lesson from Finn ... if you do ... you'll never have the chance to learn anything from him because he won't be alive to show you ... and as for the people who are telling you to do this ... they aren't strong enough to allow a child like this to come to Earth ... be stronger than that .... please know I support you either way ... I've prayed to God to save your child ... I've prayed to your child to be savable ... I feel connected to every child with a malformed heart ... because I know just what it's like to be them ... and none of us would want to be the aborted baby because of our defect ...
ReplyDeleteI'm so sorry you had to go through this difficult process. That was a choice no parent wants to have to make. Hugs and peace to you and your family.
ReplyDeleteI'm sorry if anything I said was insensitive and hurt your feelings. It was NOT intentional. I pray for peace for you and your family! *hugs*
ReplyDeleteUnbelievably sad. HUGE hugs to you and to your family. I cannot imagine being in that position. I haven't been on Twitter for some time so I hadn't heard your sad news.
ReplyDeleteMORE HUGS
Sam
(of @babyREADY and @iamsamisam)